Teenage cancer survivor shares message of hope
September 7, 2011
REDSTONE ARSENAL, Ala. -- With every song she sings, Lindsey Jones shares her message of hope.
She enjoys singing songs like Mercy Me's "I Can Only Imagine," Miley Cyrus' "The Climb" and Carrie Underwood's "Temporary Home" for audiences across the state. She also has a long list of gospel songs in her repertoire that inspire and encourage.
At the young age of 15, Lindsey is a 10-year cancer survivor. Her disease has left her blind, and her slight 4-foot-6 frame conveys the struggles her body has gone through to overcome a cancer that is both rare and deadly.
Somehow, with hope, her family and God on her side, Lindsey beat the odds of her cancer and now shares her story through song and her own personal testimony. On Sept. 14, as she sings the national anthem at Team Redstone's kickoff of this year's Combined Federal Campaign in Bob Jones Auditorium, Lindsey will represent all the good that giving to the campaign can achieve. And with this year marking 50 years of giving, those who contribute to the Combined Federal Campaign can know their charitable giving has made a difference in the lives of others whose stories of hope are similar to Lindsey's.
For Lindsey, that giving came through the Make A Wish Foundation and Give Kids The World, two organizations that made sure a frail, but joyous 5-year-old enjoyed a dream come true.
"Make A Wish grants you a wish, any wish of your choice and my wish was to go to Disney World," Lindsey said. "I had just gotten out of the hospital. I had just finished chemotherapy. And that was my wish."
At first her mother, Terry, who works at Marshall Space Flight Center, didn't want to enjoy the offer of an all-expenses paid trip to Disney World.
"I thought, honestly, that when they made that offer it was for the terminally ill, and I didn't want that because I was in denial and I didn't want to think that Lindsey could be terminally ill," Terry said. "But then I realized this is a trip for the whole family to get away from all that we had been through. It was a trip for us to enjoy, and to get away from the thoughts of hospital rooms, doctors and treatments for a little while."
While the Make A Wish Foundation did make Lindsey's wish come true by providing transportation to Central Florida, during the trip she and her parents -- including dad Keith, who works at Coca Cola and is a Navy reservist -- stayed at the Give Kids The World Village, a nonprofit resort near Disney World for children with life-threatening illnesses and their families. Give Kids The World provided accommodations at its resort, meals for a weeklong vacation, and donated admission tickets to Disney World. Besides the usual family amenities of a resort, Give Kids The World also provided medical services if Lindsey needed them and the staff left surprise gifts for her every night in her room. Both organizations are registered with the Combined Federal Campaign.
"I gave to the Make A Wish Foundation before Lindsey got sick. But I never really knew what all they did for children. We're living proof that these two organizations do everything possible to give a sick child their wish," Terry said.
Lindsey's struggle against cancer began in spring 2000, about a month before her fourth birthday when her mom noticed she was dropping things and couldn't pick them up. A trip to the doctor in Huntsville got the prognosis of lazy eye. But about a week later, as Lindsey was stepping off their home's front porch, Terry noticed that her daughter was holding on to the stair railing while, at the same time, using her foot to feel her way down the steps.
Terry made a call to Children's Hospital in Birmingham and in a few days they were being seen by specialists at the hospital.
"They did a test and in 20 seconds they knew something was wrong up in my head," Lindsey said. "The next day, I woke up in my hospital room and said 'Mom, dad, turn on some lights. I can't see.'"
In just a few short days, Lindsey had lost her eyesight. Doctors determined that a tumor the size of a lemon was lodged behind her sinuses and was pressing on her optic nerve. Because her cancer was so aggressive, treatments of radiation in the morning and chemotherapy in the evening were started immediately, even though doctors were not sure what type of cancer they were helping Lindsey fight.
On April 3, 2000, Lindsey and her family were given the diagnosis of the rare and often deadly cancer that was attacking Lindsey's brain and her life. It is known as rhabdomyosarcoma, a cancer that usually only strikes teenage boys.
"I was the first girl they have found this cancer in," Lindsey said.
For the next four months, Lindsey and her mother remained at Children's Hospital. Lindsey did not return home for good for a year after her diagnosis. Her tumor was inoperable, leaving chemotherapy and radiation as the only two options for fighting the cancer. The treatments made Lindsey vomit about 40 times a day. She lost her hair, had blisters in her mouth and down her throat, and had a feeding tube for nutrients because she couldn't eat. For four months, she couldn't walk.
"When we went to the hospital we knew something was wrong, but we didn't think it was cancer," Terry said. "Lindsey was always really healthy. Doctors told us that everybody has cancer cells in their bodies. It's just a matter of if and when they grow. There really is no explanation for what happened to Lindsey."
Despite everything, Lindsey remained the happy, optimistic child she had been from birth.
"I always told my mom that no matter how many times I threw up, isn't it a wonderful day? In my opinion, two things helped me get through this -- a positive attitude and the Lord," Lindsey said.
"But I was really too young to understand at the time what was happening. I remember asking my mom 'When you were young, and you went through cancer was it like this?' I was too young to know that not everyone gets cancer."
Though Lindsey's tumor shrunk and no longer presses on her optic nerve, she still suffers from blindness. But Lindsey and her parents are hopeful that someday she will be cured from that, too.
"With the Lord's help, she will see again. There is new research every day," Terry said. "We don't give up hope. If we gave up hope, we would not be here today."
Until then, she lives a full life doing many of the things a sighted teenager does.
Lindsey takes tap and ballet lessons, attends Gurley Church of Christ, and has enjoyed Girl Scouts and 4H. As a sophomore at Madison County High School, she plays the small brass drum in the band, sings in the school choir, and is an active member of the school's Scholar's Bowl, Student Government Association and Key Club. She is in honors classes and is in the top 10 percent of her class. She likes to text message and email friends, and loves to read and does so in Braille. Her aspiration is to be a National Merit Scholar and to someday be an oncologist so she can help others who are diagnosed with cancer.
"Even though I lost my vision, I still have a vision for life," Lindsey said. "Just because you can't see, doesn't mean you can't accomplish what you want in life. I want to do everything that a person who sees can do."
But there are challenges. Lindsey is taking growth hormones in hopes of reaching a normal size for her age. She has to be careful not to get sick because even a slight cold could be dangerous for her health. Eventually, her teeth will fall out due to the cancer treatments.
"A lot of people think that once chemotherapy is over you are done with it. But you aren't. It stays in your system for a long time," Terry said. "There are hurdles every day that we need to cross. Chemotherapy stunted Lindsey's growth. Her teeth have no roots. She still has nose bleeds and there is still a mass in her head. What has happened to Lindsey will follow us forever. It's like a lifelong journey."
"These things may be to worry about," Lindsey added about ongoing medical concerns. "But things could be worse. I'm still alive and I want to live life to its fullest. Why be sad when you can be happy?"
Lindsey's story of cancer survival has given her a way to inspire others facing cancer or other life threatening diseases.
"I like to tell my story to classmates and go different places where I can tell my story and sing," she said. "I want to give back to others what others have given me. I want to tell my story because I hope that someday there will be a cure for cancer."
She sang for the first time in public at a softball game at Central School when she was 6. Today, she is sought out to sing at various events throughout the area. Last year, she was the Champion Child for Alabama, traveling through the state to represent Children's Hospital. In that role, she appeared on the Children's Miracle Network and, in June 2010, she traveled to Washington, D.C., to meet President Barack Obama.
She remains an ambassador for Children's Hospital and is the honorary youth chairman for the American Cancer Society in Huntsville.
"I want to bring hope to others," she said.
"The main message I want to get out to people is to have hope, to keep a positive attitude, to keep your head up and trust in the Lord because no matter what you can get through anything."